The Story So Far.

It’s been well over a month since I posted anything. So I have written this piece mostly for myself as a record of my cancer journey so far this year. But for those who have been following the blog over the last few years feel free to have a read if you are interested. Sadly we haven’t managed to sneak away anywhere so I don’t have some wonderful hidden location or magnificent photos to share. In fact I have been looking at all my old photos dreaming of returning to some of the places we have been.

I think many of us will look back on 2020 as an “annus horribilis” as the queen so aptly put it in 1992. (Was it really that long ago?) For Sarah and I there have been some mixed blessings in all of this. We had planned an extended trip to the South Island which would have been interrupted by the first lockdown. Making a mad dash home in March from the lower south island would have certainly spoilt that trip. Not to mention cutting short some excellent walks and bike rides.

If after the first episode in 2016 I could have asked for the perfect time to have cancer reappear, other than never, then maybe 2020 was the year.

During a trip away in December last year I noticed a lump on my left shoulder. Although I probably knew at that point that my lymphoma was back with avengeance, I decided to ignore it. hoping as you do that it vanish on it’s own accord. Come January my haematologist had already booked a CT scan to check progress on the lump in my chest, found in 2019. The CT scan showed increasing areas of concern. As well as confirmation that the lump in my neck was probably multiple enlarged lymph nodes. A biopsy soon afterwards confirmed that fact.

Ponsonby Road, March 2020

Chemo started in February, with the plan to have 6 rounds of Bendamustine (a chemotherapy drug) and maybe a stem cell transplant at the end of that process. Initially I tolerated the chemo reasonably well allowing us to get away and explore a number of free camps along the Waikato river. The weather was fantastic we enjoyed ourselves immensely, I almost forgot about the cancer. Then Covid 19 which had been lurking in the background hit with full force. Lockdown and the associated travel ban curtailed any immediate plans to get away again. One major benefit of this was the lack of traffic on the road getting to hospital and other appointments.

With the lockdown lifted in May and after my monthly chemo dose, it was again the chance to snatch a few days away. Back at Shakespear Regional Park, one of our favourite spots close to Auckland. Here I managed to trail after Sarah as we completed a number of the walks. The tranquility of this place makes it hard to believe that you are so close to the biggest city in New Zealand.

Returning home after a few very restful days, and having completed four rounds of chemo, it was back to Auckland Hospital for a CT scan. This scan is performed to check how the chemo is working and if needed change drugs midstream. Results of this scan looked promising with all nodes reduced in size. So no need to change drugs and even the threatened stem cell transplant seemed to be fading as a requirement.

Feeling good about life and hoping that the cancer was well under control we escape again in June. Heading to the NZMCA Park in Waihi and then down the coast towards Tauranga. Stopping at some of the freedom camping spots along the way we were again blessed by great weather.

My final round of chemo was scheduled for early July leaving us free to escape once this was out of the way. We had promised friends of ours that we would catch up for a weekend of music with a group known as the 5th Wheel Shuffle. A loose collection of motorhomers with a passion for music. But first it was a trip to Matamata and Hobbiton. A real treat to visit without the thousands of overseas tourists kept out of the country due to Covid 19.

Despite feeling on top of the world and without any real adverse effects from the chemotherapy. I was back to the Heamatologist in late July for another check up. Sadly the only visible lump on my body wasn’t playing ball with the drugs. Not having shrunk enough a PET scan was ordered. This scan highlights active cancer growth within the body, rather than just measuring tumor size. The results a couple of weeks later were one of my darkest days so far this year. Not only had the nodes not decreased in size they had the cheek to actually increase. Another biopsy was required.

I had my biopsy taken on the day (in late August) that Auckland entered level 3 lockdown with Covid 19 back in the community. Auckland Hospital became like a fortress with access severely restricted, every visit required signing in at the door. Two weeks later it was back to run the gauntlet at the door for the results. The gloom that had descended a couple of weeks previously lifted slightly when I discovered that the Lymphoma hadn’t transformed to a more aggressive form. However a more intense form of chemotherapy was required and the stem cell transplant was now back on the table. It would be 3 rounds of ICE Chemotherapy (given on three consecutive days three weeks apart) with another PET scan after 2 rounds. Treatment started the following day. Each drug is given in a mix of saline solution, with this treatment containing three drugs. Making a total of around ten litres of fluid, per round. Needless to say frequent stops to the small room down the corridor became a regular part of my visits.

When seeing the haematologist he had mentioned that the chance of hospitalisation with this form of chemo was much higher than the previous regime. So it proved to be with my temperature spiking a week after my second round. Thankfully after massive doses of antibiotics and a few nights under the care of the wonderful nurses and I was back home again.

The results of my first PET scan looked more like a red Christmas tree than this image I found online. But it gives you some idea of how the cancer is highlighted in the scan. So it was with some trepidation that I headed to my second PET scan somewhat dreading the results. The thought of another failed chemo regime was very much on my mind. Sitting in the heamatologist’s office a few days later he told Sarah and I that the results were “mostly” good news. An expression made us wonder what was the part that wasn’t quite so good. Turns out that the lump on my shoulder was still active but they felt there had been sufficient result to proceed to transplant.

The third and final round of the chemo is known as a mobilisation round. Three days after the chemo I was to start three daily injections (G-CSF) into my stomach to encourage the growth of stem cells. This would carry on for as long as was required to produce sufficient stem cells that could be harvested for the transplant. Like all people going through chemo I had been subject to regular blood tests. Given that there can be significant changes to your body chemistry it’s import to monitor this vital area.

So it was in the middle of October when I had a call from the staff at heamatology day stay. Telling me that my red blood counts were low and I needed to come in for a transfusion. I have never had one of these before but given all else that had been going on, I guess it’s just part of the experience. After a full week of G-CSF injections I presented myself back to daystay hoping that a blood count would show sufficient cells for harvest. I never knew there were so many types of cells in your blood, but it’s something called CD34 that they are chasing which is the technical term for the stem cells. Sadly it was a fairly quick trip back home after a negative showing.

The next day (Tuesday) it was back for another try. At least this time my CD34 cells registered at 2 but the count needs to be greater than 10. Another bag of blood to top up my flagging red cell count and back home again. Returning on Wednesday the news was again slightly better with my CD34 count now up to 8. This was going to be a big day with two bags of blood plus a bag of plasma to keep me going a bit longer.

The decision was made that my counts were close enough to the target that they would insert an Apheresis line into my neck. Since my arm veins are stuffed after multiple rounds of chemo this is the only collection option. Performed under local anesthetic they make a cut into your neck and then insert the large plastic tube into one of your veins. All guided by ultrasound to hopefully prevent any accidents. They also made the decision to give me a special booster shot. This is a special drug called Plerixafor that comes with a $7000 price tag. (I must say they are spending some money on me.)

The following morning it was down to NZ Blood to attempt the collection of my CD34 cells. It’s a very smart building and everything is brand new. They have been here for a little while but have only recently taken over the whole building. In a small family coincidence one my sons was here two days prior donating blood. I felt very lucky to have my own sunny room and it wasn’t long before things were underway.

The morning started as they all seemed to have done that week with the obligatory blood tests. Thankfully they could use the line in my neck for that as my arms had been turned to pin cushions that week. It takes about two hours to get the CD34 results but since I was close the day before they got underway regardless. A couple of hours later the doctor proudly informed me that my count was around 50 so they should be able to do the collection all in one day.

They wouldn’t know for sure if they had collected all they needed till they had run a number of tests. So it’s not till around 7pm that the doctors called me to tell me they had sufficient. That meant I had to spend Thursday night with this lovely thing poking out of my neck. They won’t remove it till they know they have enough and they only do that during the day time. You can probably imagine how well I slept that night. Imagine having to do that for another two or three nights.

Like a lot of people suffering from cancer, and other serious illness, I have had my moments with sickness, loss of appetite (I have managed to lose ten kilos which is good for me.) and generally feeling unwell. Thankfully I have had wonderful support from Sarah and my three boys (L to R) Thor, Richard and James as well as friends and other family members. This support has made the dark days brighter and made the whole year much easier than it might have otherwise been. Sarah’s taxi service, getting me too and from the hospital and other appointments has been amazing. I really do owe my family a lot.

From here a tentative date for hospital admission is 11th November for phase two. Here I will undergo six days of chemo, to try and kill any remaining cancer cells. This will also destroy the ability of my bone marrow to produce red and white blood cells. So on the seventh day they will return my stem cells which will take around two weeks to re-graft within the bone marrow. From there as my counts start to return to a very low level of normal I will be discharged home for a recovery period of between two and four months. Hopefully with enough of summer or autumn left to get out and about in the motorhome.

Like one or two of the other blogs I have written on this subject this year, this has been written to document my journey. Rather than to create riveting reading for my motorhome followers. So if you have read the story to the end thanks, and I hope to be writing about motorhoming again very soon.

To view the places we have visited click here to see them on Google maps. You can then click the link to read the blog about that area.

To view our Campground Ratings system, that we have done for places we have stayed click here 

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24 thoughts on “The Story So Far.

  1. Sending our best wishes to you on this cancer journey, not always easy is it. There is always a lot to get your head around when you are in that situation. Hugs to you and Sarah.
    Robin and Jenny, Romany Rambler blogspot

  2. I have been following you for a while. You have a good writing style that is enjoyable to read despite the health subject. I too am retired and got hit with cancer shortly after retiring. Has taken 2 years out of my life, but I seem to be doing ok so far; so I have empathy with your situation.
    Just for your interest I built my MH from a 1968 SB Bedford bus. An enjoyable challeng of some 15 years duration. It is now a very comfortable motel on wheels for me

    1. Many thanks for the comments Steve. Glad you enjoyed the read even though it’s not the happiest subject. Cancer is a journey that a lot of us seem to take each handling thing best we can I don’t think that there is a correct path but being happy goes a long way

  3. Wow, what an amazing journey you have been forced to undertake – thank you so much for sharing. All the very best for your continuation and recovery over the next few months. Thinking of you and yours from the Naki.

  4. You are a born writer John. Sorry to hear you have another delay and that you are having so many blood transfusions meanwhile.

  5. Have read to the end and found it it very riveting.Sharing personal stories can be quite daunting but help other. May God Bless you

  6. Thank you for sharing the path your illness has taken you on. I am also following a path and it is comforting to know that I’m not alone. Others have gone this way before and there is still hope. God Bless You.

  7. I’ve been watching your journey for a while now, and like others have mentioned, I wondered how you were getting on during our Covid fun. I have a bestie who’s just done his second round of Stem Cell treatment for multiple myeloma… it’s no picnic that’s for sure. I live with auto immune, so like you, have been dodging anywhere C19 could be, (iso at home until Level 1 meant my home renos got done, and the kids detritus (kids long gone from home) packed up. Hang on in there. You sound a rather pragmatic person, as only one who’s had years of health issues knows. Keep your chin up, I bet your family have been cheering you on every step of the way. Sending lots of admiration and support for your journey. Take care.

    1. Many thanks for the support Lorraine. Having yet to complete the first round I don’t know how your freind can have done it twice. I hope you haven’t been too disrupted by the whole covid thing for people like us with compromised immune systems it’s certainly been very trying times.

  8. Robert and I have been thinking of you and recently with no update hoping things were going ok, you got in before I started sending pms. Happy to read you got your stem cells done all the best with the next stage you and your family and close friends are amazing ❤️ you got this 👍 even thou you are doing this blog for your records, believe me when I say there are people out here that have met you both and care 💯

    1. Many thanks Fay. Really appreciate the comments. Looks like the two of you are having a fantastic time in the deep south. I am really looking forward to getting into the motorhome and experiencing all the country has to offer. In the meantime your photos will do, bringing back memories when you visit somewhere we have also been.

  9. Thank you for the update. I was walking home from work today and actually thought of you and wondered how you were doing. Best wishes from Canada! I will be thinking of you on the 11th.

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